Patient’s Perspective: Getting an Endoscopy for Celiac Disease Diagnosis and Management

Patient's Perspective: Getting an Endoscopy for Celiac Disease Diagnosis and Management

In 2010, a blood test indicated I had celiac disease. I was never told about, or offered, a follow-up endoscopy to confirm the results or determine the severity of my condition at that initial appointment.

Instead, I followed the doctor’s orders and started a strict gluten-free diet to manage the autoimmune disease. Overall, I feel much better since adhering to the dietary changes and decided I didn’t really need an endoscopy (which I learned about later) to double confirm my celiac disease diagnosis. My main concerns now are cross-contamination and mislabeling of food products at stores and restaurants.

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Fast forward eight years and new digestive concerns landed me at the gastroenterologist’s office. To help diagnose my new issue (which turns out to be mild gastroparesis), my doctor explained that we should do an endoscopy of my esophagus, stomach and the upper part of my small intestines to be sure my celiac disease was well-managed and not causing my new issues. Gluten can hide in so many places and even the most careful person could accidentally be exposed.

If my celiac was not under control, she’d be able to see the extent of the damage in my digestive tract, including my stomach and upper intestines.

My Endoscopy Appointment

I made an appointment for the procedure at my local hospital and prepared as you would for any minor surgery. I wasn’t allowed to eat or drink after midnight or take my morning medications.

After I arrived at the hospital and was set up with a room, I was taken to the surgical area where an anesthesiologist prepped me and eventually put me under without the use of a ventilator. I was glad for that because those things cause a terrible sore throat for several days after a procedure!

A small round, rubber piece was placed in my mouth to keep my lips and jaws parted while I was sleeping. The doctor would later feed a tube into my mouth and down my esophagus to my stomach and intestines where she could guide a video camera and tools to remove tissue samples.

Once inside, the doctor can visually examine the tissue (including the villi lining the intestines) for signs of celiac disease, and if present, determine how severe the condition is progressing. While I was under my doctor also took several small biopsies, or tissue samples, to be tested for inflammation.

I didn’t feel any of the quick, 15-minute procedure. When I woke up, I was disoriented and extra chatty, which isn’t uncommon when you’ve had anesthesia. I felt fine the day of the procedure until the painkillers given to me in my IV at the hospital wore off.

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Time for Recovery and Rest

Later on the evening of my endoscopy, I had a very sore chest. It felt like an elephant was sitting there and it hurt to take deep breaths. I was told this isn’t uncommon after having an invasive procedure, with biopsies, in my chest.

I felt normal a few days after the procedure. I would recommend taking the day of this procedure off work and have a light schedule the following day in case you also experience residual pain.

I’m thankful I did this test to see how well-managed my celiac disease was after eight years on a strict gluten-free regimen. My digestive system looked great and my doctor had no concerns.

If you’re preparing for this procedure to help confirm a celiac disease diagnosis or follow-up on the disease progression, make a list of questions to ask your doctor before your appointment. On the day of the procedure, it’s hard to remember everything you want to know about, especially if they give you medication to calm you before going into the surgery area.

I hope this account of my endoscopy was helpful. Before I went in for this appointment I read many, many blog posts from other bloggers and it helped me tremendously to know what to expect during and after my appointment.

Until next time,
Choose healthy!
Angela Tague

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*This post was last updated on September 29. 2021.

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